Creating a Registry to Understand Sudden Cardiac Arrest and Sudden Cardiac Death in Australia

Vitals monitor in operating room

As a cardiologist practicing at the Baker Institute and St. Vincent’s Hospital in Melbourne, Australia, Dr. Elizabeth Paratz, MBBS(Hons), BMedSc, FRACP, recognizes the importance of using findings from sudden cardiac arrest/death cases to improve outcomes for other patients. This recently led her to strengthen her research skills and apply them to help create the first registry in Australia that captures multi-source surveillance data on sudden cardiac arrest and related deaths.


Improving Understanding of Sudden Cardiac Deaths

In the clinical setting, Dr. Paratz has seen many healthy young and middle-aged people die of sudden cardiac arrest, often with no cause found after extensive investigation. Yet, she points out that historically there has been no systematic process in place to gather data on these cases and use it to inform care on a broader level. 

Part of the problem in Australia, as well as around the world, is that the definition for an unexpected cardiac death is open to variable interpretation. As a result, many seemingly healthy people who die of cardiac-related causes are not captured, so there is no clear snapshot of the current situation. Recognizing this gap, Dr. Paratz has undertaken her PhD research in establishing Australia’s first comprehensive multi-source surveillance sudden cardiac arrest/death registry, called the Unexplained Cardiac Death Project

The project, led from the Baker Heart & Diabetes Institute, involves experts from multiple specialties in Victoria, and a team of experts in New South Wales, with plans for the registry to ultimately be expanded nationally. This initiative records all cases of sudden cardiac arrest/death in patients aged 1-50, screens at-risk family members and offers genetic analysis and participation in a genetic biorepository program so researchers can learn from the clues these samples provide.

The Need for Clinical Research Training

Dr. Paratz’s path to develop this registry really began several years ago, when she participated in Harvard Medical School’s Global Clinical Scholars Research Training program, which is a multifaceted program that helps clinicians strengthen their aptitude in research and epidemiology. 

This educational experience prepared her to delve more deeply into health care research and methodology. This was essential to build on her clinical expertise in order to have a broader impact on the population at large. Strengthening her skills in this area also enabled her to create a mechanism for a systematic multi-source case collection process. In addition, she gained a realistic appreciation of the significant challenges involved in obtaining ethical approval, competing for grant funding and the enormity of setting up and maintaining a clinical registry. 

Screening for Genetic Causes of Sudden Cardiac Arrest 

“You never forget patients who die but especially when they are young and healthy,” Dr. Paratz says, adding that many patients’ family members also experience great stress worrying about their own health and wondering if they, or their relatives, could be at risk for a similar fate. 

To address this need through the registry, Dr. Paratz helped establish clinics that screen family members of those who experienced cardiac arrest and/or death through a multi-disciplinary team that includes cardiologists, a general practitioner, a psychologist and genetic counselor.

In its first eight months of operation, the registry has captured data on 500 index patients and has screened many first degree family members to identify any factors that could put them at risk. 

Securing Funding for the Registry

Dr. Paratz explains that the main funder of the registry is the Ross Dennerstein Foundation, a charitable foundation established in memory of a young pilot who died suddenly in his 40s. “I was also fortunate to personally receive a co-funded NHMRC/Heart Foundation scholarship, with top-up funding from the Royal Australian College of Physicians,” she says. 

There are several populations she hopes to better understand through the registry data.  One area of particular interest is that of sudden cardiac death in pilots. Although sudden cardiac death is fortunately rare in the aviation field, a pilot’s sudden cardiac death can potentially result in the death of hundreds of passengers. Effective management of cardiac conditions in the aviation environment is of the highest priority, says Dr. Paratz, who is also a qualified Designated Aviation Medical Examiner.

Her research also focuses on women, who have been consistently shown internationally to be vulnerable to poorer cardiac arrest outcomes than males. She plans to measure a variety of variables through the registry data to examine if this discrepancy exists among Australian women. Other vulnerable groups include patients in rural and regional areas where access to care is more limited, particularly in Australia where medical care may be several hours away by airplane. In addition, since cardiovascular disease is the largest cause of death for Australian indigenous, Māori and Pacific Islander peoples, the registry will provide an important snapshot of the risk factors that exist among these groups.

Capturing Data on Sudden Cardiac Arrest Patients

The registry utilizes data from the local hospitals, ambulance data and post-mortem data. Most of the demographic information is obtained via an opt-out approach, enabling the registry to capture the full scope of cases so it can paint an accurate picture of the rate of cardiac arrest.

“There is consent first obtained by ambulance or forensic services, after which we approach the families and invite them to be involved,” she says. Patients and families are invited to opt in to clinical assessment and screening processes, and rates of uptake amongst affected families have been high.

Once the data is collected and patterns have been identified, the findings will be shared with a broader audience. “We will disseminate the findings primarily through high-impact research and publications and also provide feedback to state and national stakeholders to optimize our management of cardiac arrest for ongoing clinical benefit,” Dr. Paratz stresses.

Advice for Other Clinician Researchers

For other clinicians who are interested in broadening their practice to take on more research-related projects, Dr. Paratz offers advice based on her own experiences.

“Always try to extend your skillset at each stage. Every skill you gain, such as balancing fellowship with a formal research program, accelerates your capabilities and really opens up fresh ideas about how to approach your current work,” she says.

“The things I have particularly focused on include: understanding research design and statistical analysis from the ground up, becoming competent in several scientific software programs and improving my graphic data presentation skills to best communicate my findings,” she says.

By building her skills in these areas early on in the registry design process, she feels she will be effective in increasing her reach and having more impact on cardiology care, hopefully preventing more healthy people from dying from sudden cardiac arrest.


Written by Lisa D. Ellis

Source:

Elizabeth Paratz, MBBS(Hons), BMedSc, FRACP, cardiologist at the Baker Institute and St. Vincent’s Hospital in Melbourne, Australia, Zoom interview, March 19, 2020.